Imbruvica fails?? Whats next?

[Cgr2018]

My brother started in july 2018 his monoteraphy treatment for a relaspsed cll with ibutrinib, and works well this time. His levels in analytics are normal levels in febrary, doing great Edith imbruvica, and he looks very healthy, practice sports, weight gain, ....but im always very affraid if ibutrinib fails, and he relapse. Now one of his nodes (when he started the treatment the same node was very big) is a little bit big. Do you know if its a sign of be relapsed/fails to ibutrinib? Do you know if exists another oral treatment if ibutrinib fails? Thank you!!! Best regards!!

[cajunjeff]

A growing node might be a sign his ibrutinib stopped working, it should be reported to his doctor. There are other causes that could be considered as well.

The first go to drug after ibrutinib these days is venetoclax, another oral drug that works very well. There are some new btk inhibitors like ibrutinib in trials now that might work when ibrutinib doesn't, they bind differently than ibrutinib,

Then there is a class of drugs called P13k inhibitors like duvelisib that can be beneficial. A Car-T trial is yet another option.

Good luck to you and your brother. Hopefully his ibrutinib is still working. If not. I would see a cll specialist to help walk you through the various new options.

[Cgr2018 in reply to cajunjeff]

This weekend he had a stomach issue with vomits and nauseas. It will be a cause of a node little bit bigger? Thank you! Best regards!

[cajunjeff in reply to Cgr2018]

Infections unrelated to cll can cause nodes to swell some, so yes, its possible you brother's enlarged node is not due to cll. But cll also has to be suspect, best to see his doctor and see.

What part of Spain do you live in? My son just got back from teaching English to kids in a small town in central Spain. We visited him there and had a great trip. Spain is such a wonderful country.

[Cgr2018 in reply to cajunjeff]

Thank you! We live in Madrid. Oh thank you, Im very glad you love Spain. The covid hits a tooo much our country, its terrible! Hope you are great!! Big virtual hug!

[lankisterguy Volunteer]

Hi Cgr2018,

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I agree with cajunjeff - there are many options, and a CLL Expert doctor will know which is the best next choice, and whether your brother even needs to consider that now.

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There are several similar previous discussions - please look for a box on this page labeled:

Related Posts

*Can't tolerate Imbruvica, what's next?

*Failed FR Ibrutinib next

*Venetoclax not working. What's next?

*What should come next?

*Ibrutinib / Imbruvica?

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That box will be in the upper right column on computer screens, but on mobile devices you need to scroll way down.

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Also you may be interested in my profile & treatment history (Tx):

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Dx 2008 Trisomy 12, Unmutated,

Tx 2010 - Rituxan monotherapy => normal bloods for 6 months then 18 months Progression

Tx 2012 -2015 Idelalisib/Zydelig + Rituxan Phase 3 trial => 27 months minor symptoms - MRD dropped to 0.08% but by month 30 rose to 20%. ALC rose from 2k to 8.3k at month 30

Tx 2015-Stopped Idelalisib trial switched in 1 day to Ibrutinib/ Imbruvica- 9 months relentless skin rash-

Tx 2016- Venetoclax/Venclexta - Off label. Nodes normal week 3 - 100 mg, Bloods normal week 5- 400 mg no symptoms, side effects or problems. MRD neg blood at 29 weeks, MRD neg marrow at 40 and 52 weeks, Paused Venetoclax Sept 2017, and restarted Venetoclax Jan 2018 due to MRD rising to 1%

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Len

[Cgr2018 in reply to lankisterguy]

Thank you so much, Len! Best regards!

[Cgr2018 in reply to lankisterguy]

Do you think that only a node bigger than normal is a sign of ibutrinib stopped working? Im affraid and feel very anxius all the time because he relapsing. My mind always go to a escenario of stem cell transplant. But I hope if the doctor give him Ventoclax, it reduce nodes, normal blood, and have deep remission. Because the 4th of febrary the results of his blood test was wondefull! Thank you, because you answers help me a lot to dealing with my terribles affraids..

[lankisterguy Volunteer in reply to Cgr2018]

There are many possible causes for one node to be larger.

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You and he need to be talking with the doctors, especially to a doctor very experienced in treating CLL with the newer targeted treatments like Ibrutinib and Venetoclax.

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There are several far less risky treatments before a stem cell transplant would normally be seriously considered.

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Len

[Cgr2018 in reply to lankisterguy]

Thank you! He feels very well, nothing extrange except the node in the neck. That is the same node that was very big when he started with imbruvica in July 2018. I read a lot of posts here, and all the people have very good results with their imbruvica treatments. And for a very long time. I never think that my brother it’s relapsing at 20 months of treatment. He felts very well. His results on 4th of febrary was great!

I don’t know why is it happen to us..!

He did 2 days ago his blood exams. But the appointment with the doctor is on 5th of May.

And all of this time I’m very very affraid and very ver anxius thinking if ibutrinib fails the next step is trasplant.

But other times I think in ventoclax as a safer for this situation, that can fix it. What do you think?

Thank you so much indeed

[lankisterguy Volunteer in reply to Cgr2018]

I'm sorry Cgr2018,

I understand you are axious, and we are answering your questions the best way possible, to reassure you, but you don't seem to understand.

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You keep asking for us to diagnose your brother or recommend specific treatments. But we cannot give medical advice,

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Those answers must come from a licensed doctor and not from this group. Sorry

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Len

[Cgr2018 in reply to lankisterguy]

Thank you. I’m just asking about if ventoclax is so far so good for Ibutrinib relapsed. I’m soanish and maybe I can’t tell you the things claerly, I’m try. Thank you so much for your help

[thompsonellen]

Venetoclax now, but likely something we aren't even talking about by the time he relapses. God willing he doesn't. One of my nodes is a little bigger and the bloodwork is .07% CLL, so that's a data point of one that he may be just fine.

[Cgr2018 in reply to thompsonellen]

Thank you. One of his swollen nodes is a little bigger (the same that was very enlarged when he started his treatment monotheraphy with imbruvica on July 2018). In the last revission on december, the analytics are perfect. But nos im really affraid about it, and also I read a lot in the webs, about Ritcher’s Transformation. And I have a very high anxiety. He felts pretty well and normal, no fever, anything except this node. I sleep pretty bad, my nights are terrible.

Thank you for your support! Best wishes!

[thompsonellen in reply to Cgr2018]

I have worked hard to learn to stay in the moment, and that has been helpful, but I understand it's hard to manage anxiety, especially during the lockdown. I'm 17p deleted and young and RT is always in the back of my mind, but I have learned to approach this one day at a time and squeeze the most out of every day. Hang in there!

[Cgr2018 in reply to thompsonellen]

Thank you for your help. I think this dramatical scenario is no very possible if he felts healthy and no other simpthoms except a little bigger node, isnt it? As I said, his results are perfect, everything great in last december. Only 3 months ago. I felt anxiety because he is going to have his first doughter this June, baca use he is 36 years old, very young. His cll was dettected with 29, pretty young.

Thank you so much again!

[ikahan in reply to Cgr2018]

Check out this clinical trial

clinicaltrials.gov/ct2/show...

Apparently it works.

[Cgr2018 in reply to ikahan]

Thank you much for your information, and you support!

Best wishes from Spain!

[Loveroflife]

I understand your concern. If the Ibrutinib stopped working by itself they might try a combination therapy like Ibrutinib and Obinutuzumab or Venetoclax plus Obinutuzumab. These combinations are time limited meaning he takes them for a year or two and then stops. He still has options and more are coming every day. Hopefully it is nothing but if it is something don’t worry he has other treatments. I’m on Venetoclax and Obinutuzumab as a first treatment because I am “young” and my lymph nodes were VERY swollen. Hope he is well.

My daughter is living in Madrid now. Was suppose to go be with her this July but I don’t think that will happen now.

Love to your family from Jamaica

[Cgr2018 in reply to Loveroflife]

Thank you so much for your response! And how is your treatment going? A Lot of secundary effects?! Of course I hope you will enjoy Madrid in july, fingers cross!

Big hug also for your family, too.